Hi Kath...thank you...I know this will help me, as I have no one in my life who has the same condition, so it will be good to hear how other people cope and hopefully get some hints and clues on how to have a better sleep..Deb
Thanks Kath for your Email,I'm down to 12.5mg of Zoloft, the antidepressant I have been on for nearly two years.
I get really bad side effects when I go up or down so have been tapering off slowly.
This is the lowest dosage I can go to before going off altogether which I'm think about starting this weekend as it's the 'Queens Birthday' long weekend here in Australia.
I have read it takes about 3 months to get it right out of your system. My sleep has been fantastic lately, I've been getting about 7.5 hours quality sleep per night and my AHI is always around 2-3 which is great.
Glad I found both the sleepguide sites and will continue on contributing with hopefully helpful and supporting insights.
I'm on another more general website called Daily Strength where I try to help, assist and support others in the SA and insomnia forums, I also recommend on the SA forum that they join sleepguide, if they want.
These illnesses seem to have made my whole life a lot clearer and I think my job in life is to help, assist and support others with these illnesses.
Thanks
Terry
Thanks Kath for taking the time to help me, especially when you were so busy with your business trip. I am so grateful for any advice from you all. I've decided now that it would be best if I did purchase a apap machine as I loath the idea of having to immerse myself in this process of 'have I done the right thing or not' if for some reason CPAP is not quite right for me. Last night my AHI was 5.2,which is the lowest I've had over more than 3 weeks of trialling. Even though I was woken a few times with a mask leak/gale blowing in my face. The APAP machine is set as a CPAP of 10 the ramp being 30 mins, in order for me to get the experieince of a set pressure . So I wonder does this mean that had it been in APAP mode I would still have gotten the same AHI result? that it is just co-incidental that the AHI is lowest yet? Initially the tech. did not have the ramp mode on the previous night when in hindsight I was only able to use the machine for 4 hours and had a AHI of 11.3. {Must have flung the mask completely off during the night] So is the ramp feature used by a majority of users? Hope my ramblings make some sort of sense. I am definitely no tech head but am very keen to learn to manage my own condition and machine. Any further advice from anyone on the forum is gratefully recieved by this niave newbie. Thanks a lot for having this great forum Kath & Mike it is so helpful. I don't feel quite so alone with this new turn in my life. Cheers Marg
Just thought I'd let you know what I look like in my Funeral Directing gear. Notice the red rose. I don't usually take a dog with me though, couldn't find a brown labrador or a black labradoodle!
Look forward to hearing about the steroid shampoo's effects.
I have used the standard Resmed Quattro and even without over-tightening the mask, it still left awful marks - and I tried different sizes. It's definitely a case of 'what works for one, doesn't always work for another.' I have a permanent nasal bridge scar from that mask, which I have to remember to hide with makeup each day :D
You must have missed the discussion we had on here a fortnight ago about the hose brackets. We've got them and also the camping spikes. The fixed bracket is brilliant, as I'm now using it and have put it higher up on the wall behind me, so there's even less tube in the way now. Here's a link to the bracket http://www.hope2sleep.co.uk/products/86
have found the babyoil works to a degree have to see doc this thursday and hope this steriod shampoo will properly clear up the problem - will let you know. just ckd the face mask and its a standard resmes quartro which do,snt leave any marks on the face unless you overtighten it. incidentelly is there a manufactured bracket to fit the hose lift to the fall ?
futher to my previous enquiry regarding itching scaley scalp.
I was recommended to rub baby oil into my problem areas.
this has had the effect of softening the affected areas after which i can literally dig the problem areas out!
unfortunately this still leaves a raised scared area on my scalp.
having showed this to a medical officer onboard a recent cruise she said it should respond well to a steriod shampoo . no doubt that will come with the same disatvantages of Betnovate. I do nonthe less feel this is my only course of action.
I will report back once ive given it a try.
As a recent user of the resmed quartro can I make a suggestion to any other new users that is to say that in my opinion the secret to success for me was to may sure the face is adequately covered by the mask and sealed properly - this may mean that perhaps it needs tightening just that little bit more.further to this just dont go leaving it to long before you clean the mask as it seems that a build up of residue from breathing through it
can result in the mask seal being broken.
I dont know if this will help others but Im sure its working for me.
Kath, I'm still have problems with sending a message to Lisa, so I have sent it in a comment. Not sure why it could be the browser I'm using. It is difficult because I am using a company PC and some things get blocked and I can't really complain.
I am getting a new IPhone shortly and that won't have any security so may help.
I know your probably asleep now. The Comments seem to work fine but messages comes up with 'error on page' and the Message box is over to the far right hand side of the page. I'll have a play around as I right computer programs for a living. I have accepted Lisa and yourself as friends. Thanks Terry
Yes Roz, it's mind-blowing at first when you do all the reading and realise just how common OSA is - in women too! You're welcome to pm me or you can email at hope2sleep@hope2sleep.co.uk if it's easier. Until the clinic was set up in Boston, all people over the river were treated by Castle Hill Hospital, here in Hull so it's good there's something nearer for you all now, and Mr Oko seems a real gem :)
thanks for all the info Kath and the lovely welcome. It was refreshing to see other women as every corner I turn, its like this complaint is directed just to men…. so thank you for setting all this up.
since december I have done so much reading i am struggling to take it all in. I'll go over to the other forum pages later today and introduce myself properly. I'm not even dressed yet!!
I found your site before I went back to see Mr Oko after xmas and bookmarked it. I have a few other health issues which I am worried are going to stop me coping so well with all this. But I have to persevere I know.
I may PM you later if thats ok with a couple of questions
Oh, glad you saw my comments to you on Mr Oko's Blog - he's doing some great work :) So pleased you've joined us on here, as this is a great place to get CPAP encouragement, and we have another 2 members new to CPAP and struggling, so have a good read through the posts. You'll also see a search bar at the top right, so anything you want to look into, if you type it in and it's been discussed before, then the old posts will show up.
Also, feel free to start a new post or add to ones which have already started so we can help you. Did you read my own story on the main website at www.hope2sleep.co.uk ? There's also lots of comfort accessories for CPAP on there too.
CPAP's not easy at first, but I promise it gets better.
Hi Kath, thanks for adding me and the encouragement from your post over on Mr Oko's Blog. I hope this is the place to leave a little info about me, if not I am sure you will guide me.
I apprecaite any help am new to OSA!
I was Diagnosed in December and originally didn't want to try the CPAP Therapy, despite having an AHI of 62. I opted to have a MAD made but realising that this was only for mild to moderate cases I did some more reading and asked to go back to see the consultant. He was very understanding and even spent over an hour with me answering questions and finding me a 'small' mask to use….well I just had my first night using my CPAP…. what a scary night. I wondered if I would wake up in the morning!
I went to bed early and managed about 3.5 - 4 hours, then had to get up to go to the bathroom, after that I just couldnt get my breathing right. I tried about 4 times but felt like I was being suffocated. I think I just ended up panicking, hyperventilating and then crying….knowing this is what the rest of my life is going to be like. In the end I decided to leave the mask off and just go to sleep… i think I got about 2 hours.. I just hope tonight is going to be easier.
At least the period that I did have the mask on I wasn't snoring according to my husband! Thats one blessing!
Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up and I have to give up and switch off for the night.See More
I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning. The machine sat on a tray because of…"
Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted?
I'll try again and I'll also discuss with the clinic whether an APAP…"
"Ramble alert! My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu. This was a very long time…"
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP. After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry. On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
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Hi Kath...thank you...I know this will help me, as I have no one in my life who has the same condition, so it will be good to hear how other people cope and hopefully get some hints and clues on how to have a better sleep..Deb
I get really bad side effects when I go up or down so have been tapering off slowly.
This is the lowest dosage I can go to before going off altogether which I'm think about starting this weekend as it's the 'Queens Birthday' long weekend here in Australia.
I have read it takes about 3 months to get it right out of your system. My sleep has been fantastic lately, I've been getting about 7.5 hours quality sleep per night and my AHI is always around 2-3 which is great.
Glad I found both the sleepguide sites and will continue on contributing with hopefully helpful and supporting insights.
I'm on another more general website called Daily Strength where I try to help, assist and support others in the SA and insomnia forums, I also recommend on the SA forum that they join sleepguide, if they want.
These illnesses seem to have made my whole life a lot clearer and I think my job in life is to help, assist and support others with these illnesses.
Thanks
Terry
Sweet dreams from OZ Kath
Thanks Kath for taking the time to help me, especially when you were so busy with your business trip. I am so grateful for any advice from you all. I've decided now that it would be best if I did purchase a apap machine as I loath the idea of having to immerse myself in this process of 'have I done the right thing or not' if for some reason CPAP is not quite right for me. Last night my AHI was 5.2,which is the lowest I've had over more than 3 weeks of trialling. Even though I was woken a few times with a mask leak/gale blowing in my face. The APAP machine is set as a CPAP of 10 the ramp being 30 mins, in order for me to get the experieince of a set pressure . So I wonder does this mean that had it been in APAP mode I would still have gotten the same AHI result? that it is just co-incidental that the AHI is lowest yet? Initially the tech. did not have the ramp mode on the previous night when in hindsight I was only able to use the machine for 4 hours and had a AHI of 11.3. {Must have flung the mask completely off during the night] So is the ramp feature used by a majority of users? Hope my ramblings make some sort of sense. I am definitely no tech head but am very keen to learn to manage my own condition and machine. Any further advice from anyone on the forum is gratefully recieved by this niave newbie. Thanks a lot for having this great forum Kath & Mike it is so helpful. I don't feel quite so alone with this new turn in my life. Cheers Marg
99 here kath
Pete
Just thought I'd let you know what I look like in my Funeral Directing gear. Notice the red rose. I don't usually take a dog with me though, couldn't find a brown labrador or a black labradoodle!
Look forward to hearing about the steroid shampoo's effects.
I have used the standard Resmed Quattro and even without over-tightening the mask, it still left awful marks - and I tried different sizes. It's definitely a case of 'what works for one, doesn't always work for another.' I have a permanent nasal bridge scar from that mask, which I have to remember to hide with makeup each day :D
You must have missed the discussion we had on here a fortnight ago about the hose brackets. We've got them and also the camping spikes. The fixed bracket is brilliant, as I'm now using it and have put it higher up on the wall behind me, so there's even less tube in the way now. Here's a link to the bracket http://www.hope2sleep.co.uk/products/86
have found the babyoil works to a degree have to see doc this thursday and hope this steriod shampoo will properly clear up the problem - will let you know. just ckd the face mask and its a standard resmes quartro which do,snt leave any marks on the face unless you overtighten it. incidentelly is there a manufactured bracket to fit the hose lift to the fall ?
regards
Tony Westcott
futher to my previous enquiry regarding itching scaley scalp.
I was recommended to rub baby oil into my problem areas.
this has had the effect of softening the affected areas after which i can literally dig the problem areas out!
unfortunately this still leaves a raised scared area on my scalp.
having showed this to a medical officer onboard a recent cruise she said it should respond well to a steriod shampoo . no doubt that will come with the same disatvantages of Betnovate. I do nonthe less feel this is my only course of action.
I will report back once ive given it a try.
As a recent user of the resmed quartro can I make a suggestion to any other new users that is to say that in my opinion the secret to success for me was to may sure the face is adequately covered by the mask and sealed properly - this may mean that perhaps it needs tightening just that little bit more.further to this just dont go leaving it to long before you clean the mask as it seems that a build up of residue from breathing through it
can result in the mask seal being broken.
I dont know if this will help others but Im sure its working for me.
I am getting a new IPhone shortly and that won't have any security so may help.
I know your probably asleep now. The Comments seem to work fine but messages comes up with 'error on page' and the Message box is over to the far right hand side of the page. I'll have a play around as I right computer programs for a living. I have accepted Lisa and yourself as friends. Thanks Terry
thanks x
Yes Roz, it's mind-blowing at first when you do all the reading and realise just how common OSA is - in women too! You're welcome to pm me or you can email at hope2sleep@hope2sleep.co.uk if it's easier. Until the clinic was set up in Boston, all people over the river were treated by Castle Hill Hospital, here in Hull so it's good there's something nearer for you all now, and Mr Oko seems a real gem :)
Speak later....
Kath
thanks for all the info Kath and the lovely welcome. It was refreshing to see other women as every corner I turn, its like this complaint is directed just to men…. so thank you for setting all this up.
since december I have done so much reading i am struggling to take it all in. I'll go over to the other forum pages later today and introduce myself properly. I'm not even dressed yet!!
I found your site before I went back to see Mr Oko after xmas and bookmarked it. I have a few other health issues which I am worried are going to stop me coping so well with all this. But I have to persevere I know.
I may PM you later if thats ok with a couple of questions
thanks roz x
Oh, glad you saw my comments to you on Mr Oko's Blog - he's doing some great work :) So pleased you've joined us on here, as this is a great place to get CPAP encouragement, and we have another 2 members new to CPAP and struggling, so have a good read through the posts. You'll also see a search bar at the top right, so anything you want to look into, if you type it in and it's been discussed before, then the old posts will show up.
A good place to introduce yourself is here http://hope2sleepguide.co.uk/forum/topics/welcome-from-kath-mike
Also, feel free to start a new post or add to ones which have already started so we can help you. Did you read my own story on the main website at www.hope2sleep.co.uk ? There's also lots of comfort accessories for CPAP on there too.
CPAP's not easy at first, but I promise it gets better.
Kath x
Hi Kath, thanks for adding me and the encouragement from your post over on Mr Oko's Blog. I hope this is the place to leave a little info about me, if not I am sure you will guide me.
I apprecaite any help am new to OSA!
I was Diagnosed in December and originally didn't want to try the CPAP Therapy, despite having an AHI of 62. I opted to have a MAD made but realising that this was only for mild to moderate cases I did some more reading and asked to go back to see the consultant. He was very understanding and even spent over an hour with me answering questions and finding me a 'small' mask to use….well I just had my first night using my CPAP…. what a scary night. I wondered if I would wake up in the morning!
I went to bed early and managed about 3.5 - 4 hours, then had to get up to go to the bathroom, after that I just couldnt get my breathing right. I tried about 4 times but felt like I was being suffocated. I think I just ended up panicking, hyperventilating and then crying….knowing this is what the rest of my life is going to be like. In the end I decided to leave the mask off and just go to sleep… i think I got about 2 hours.. I just hope tonight is going to be easier.
At least the period that I did have the mask on I wasn't snoring according to my husband! Thats one blessing!
Thank you Kath,
Will keep you in touch with how things are going? I agree, roll on 7th Dec and will see how I get on :)
Isla x
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